Chronic Pain Partners - EDS Awareness
LightNews LightNews
banner
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social
840 followers 1.2K following 320 posts
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians about the Ehlers-Danlos Syndromes and related conditions.

https://chronicpainpartners.com
Posts Replies Media Videos
cppedsa.bsky.social
Donna Sullivan introduces some of the better-known EDS specialists who emerged over the last ten years in podcast Episode 2: Medically Complex Children:

www.chronicpainpartners.com/episode-2-me...

#EDS #hEDS #HSD #Hypermobility #MedEd #MedSky #FII #Zebras #RareDisease #Spoonies #Doctors
January 19, 2026 at 6:56 AM
cppedsa.bsky.social
The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible

buff.ly/zTVAuva

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Disability #Autism #ADHD #AuDHD #Dyslexia #Dysgraphia #Dyscalculia #Dysautonomia #MCAS #Mastocytosis #Fibromyalgia #Spoonies #MedSky #Zebras
Illustration featuring a green sunflower lanyard, a badge with sunflowers and the words "Hidden Disabilities," a passport, and a person carrying a tote bag. The background has the headline: "The Sunflower Lanyard: Making the Invisible Visible." A circular logo reads "EDS Awareness Ehlers-Danlos Syndromes." Text at the bottom explains: Wearing an optional sunflower lanyard in public places signals staff to lend extra help, time, or understanding as one navigates their business. Use of the lanyard is voluntary; disclosure is at the wearer’s discretion. It is especially helpful for those with EDS, autism, and other conditions, and is now recognized in several countries. Website at the bottom: www.chronicpainpartners.com
January 13, 2026 at 1:14 PM
cppedsa.bsky.social
New App Can Help Screen for EDS in Canada

buff.ly/xTVdnhJ

#EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Screening #Medicine #MedEd #Canada #Doctors #Nurses #Diagnostics #zebras #NEISvoid #MedSky
Promotional graphic about a new hypermobility screening app in Canada for Ehlers-Danlos Syndromes (EDS) awareness. At the top left, there is an EDS Awareness logo. Main text says, “New Hypermobility Screening App in Canada.” The central image shows a man with his arm outstretched while a woman uses a smartphone to take a photo or video of him. A yellow highlighted effect is around the phone, emphasizing its use. There is an inset photo of a goniometer (joint measuring device) with a red “X” over it, suggesting the app replaces it. Text at the bottom explains that doctors at the Kite Research Institute in Canada developed an app for hypermobility screening, which can make EDS assessments faster by removing the need for a goniometer. The website “www.chronicpainpartners.com” is listed at the bottom, along with an icon of a stylized measuring gauge.
January 7, 2026 at 1:06 PM
cppedsa.bsky.social
In which Donna Sullivan shares a small win for the #EDS community with our EDS Unplugged Podcast hosts in Episode 2:
www.chronicpainpartners.com/podcast/

#Hypermobility #hEDS #HSD #Zebras #NEISVoid #Spoonies #COMPLICATED #MedSky #Doctors #podcast #Medicine
January 2, 2026 at 3:32 AM
cppedsa.bsky.social
Help us kickstart 2026 with a donation in John Ferman's memory here today, thank you:

buff.ly/mtpdkn9

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Zebras #Spoonies #Support #MedEd #MedSky #Medicine #HealthNews #NEISvoid
Colorful fundraising graphic. In the center is a clear jar filled with coins, labeled "DONATE." Bright party bunting and confetti decorate the background along with cartoon bursts and a party popper icon. At the top, black text reads, "Help us kick 2026 off with a bang!" In the upper right corner is a circular badge: "EDS Awareness Ehlers-Danlos Syndromes." Along the orange bottom border, the website "WWW.CHRONICPAINPARTNERS.COM" is displayed in blue. The scene is festive and cheerful, encouraging donations for EDS awareness.
December 30, 2025 at 1:14 PM
cppedsa.bsky.social
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
December 27, 2025 at 12:14 PM
cppedsa.bsky.social
Happy Holidays from the media team at Chronic Pain Partners, we look forward to continuing to support #zebras in 2026.

#EDS #hEDS #HSD #Hypermobility #EDSAwareness #Spoonies #EhlersDanlosSyndrome
December 24, 2025 at 2:57 AM
cppedsa.bsky.social
For anyone not yet aware, we are missing our Founder and President John Ferman dearly this Christmas 2025:

buff.ly/5zJaMRd

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #NEISvoid #Support #CPP #MedEd #Advocacy #MedSky
Memorial graphic featuring two photos of John Ferman, an older man with neatly combed hair, both showing him smiling. At the top, text in large blue letters reads "IN MEMORY." Below, it says, "We miss you dearly this Christmas." There are small images of doves at the top corners and decorative holiday greenery with red bows framing the text. "John Ferman," appears in bold white letters, described as the founder of Chronic Pain Partners. A small, lit candle illustration is centered between the two photos. In the left photo, the man wears a lavender shirt and a lanyard with name tags; in the right, he wears a black shirt promoting Ehlers-Danlos Syndrome awareness, also with a name tag. The overall tone is warm, respectful, and holiday-themed.
December 22, 2025 at 12:32 PM
cppedsa.bsky.social
Meet Donna Sullivan, mom of 3 kids with EDS in the top of podcast EDS Unplugged Episode 2:

#EDS #hEDS #HSD #Zebras #NEISVoid #MedEd #MedSky #EhlersDanlos #Medicine #COMPLICATED
December 20, 2025 at 10:43 PM
cppedsa.bsky.social
A Cheerful Gift Guide for People with EDS, Chronic Pain, Chronic Illness, Disability, and Those Who Love Them: Chronic Pain Partners’ 2025 Gift Guide

www.chronicpainpartners.com/2025-gift-gu...

#EDS #hEDS #HSD #Hypermobility #Support #Gifts #Spoonies #Zebras #NEISvoid #ChronicIllness #Disability
Holiday-themed graphic with evergreen foliage and red berries decorating the corners. The text reads: "Holiday Gift Guide" at the top in large script, with a mustard yellow banner behind "Holiday." Below, five gift ideas are displayed with images and labels: Chronic Illness Planner – a spiral-bound black planner with doodle art on the cover. Kitchen Aids – a garlic crusher shaped like a cartoon vampire, labeled "GRACULA." Comfort Items – a woman wearing a colorful butterfly sleep mask. Adaptive Clothing – a person in a comforable-looking gray hoodie. Plushie – a yellow plush toy bunny with a rainbow ribbon. Text at the bottom says: "Get them at chronicpainpartners.com"
December 15, 2025 at 12:32 PM
cppedsa.bsky.social
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family in the Netherlands

buff.ly/puQVunj

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #Spoonies #NEISvoid #Medicine #Doctors #Nurses #FII #MedicalKidnap #MedSky #Genetics #Autism #ADHD
The Hellenbrand family of four standing together outside next to a military-style vehicle. The family includes a woman with short red hair, wearing glasses and light green clothes, a man in a maroon hoodie and jeans, a boy in a suit and tie with white sneakers, and a girl in a long pink dress with glasses.
December 11, 2025 at 12:10 PM
cppedsa.bsky.social
EDS Unplugged podcast Episode 2: Medically Complex Children - interview with Donna Sullivan, producer of COMPLICATED

www.chronicpainpartners.com/episode-2-me...

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #NEISVoid #Disability #Medicine #FII #MedicalKidnap #Doctors #MedSky
Colorful promotional graphic for a podcast or video episode. At the top, bold pink text reads "MEDICALLY COMPLICATED CHILDREN". Below is a large pale yellow number 2, part of a swirling design filling the background. The main focus is the prominent "EDS UNPLUGGED" logo in black and yellow, with two images of black women in black athletic wear: one holding a megaphone, another triumphantly holding up crutches. To the right, a smaller text says "sponsored by EDS Awareness Ehlers-Danlos Syndromes" with the organization’s logo. At the bottom right, there is Donna Sullivan, a woman with brown hair, wearing glasses on her head, smiling and sitting with her arms resting on a giraffe-patterned cushion. Pink text reads "DONNA SULLIVAN" with an oversized black ampersand beside it. The overall design is lively and emphasizes awareness and support for medically complicated children and Ehlers-Danlos syndromes.
December 9, 2025 at 1:14 PM
cppedsa.bsky.social
Catch the Boston premiere and Academy Awards "For Your Consideration" screening of the EDS film COMPLICATED Dec 11th:

www.eventbrite.com/e/boston-spe...

#EDS #hEDS #HSD #Hypermobility #Complicated #Film #Disability #Spoonies #Zebras #FII #MedicalKidnap #MedSky #Doctors #Nurses #Parents
Promotional graphic for a film screening. The top half shows a stylized illustration of an adult and child holding hands, walking away, with a background of faded, overlapping documents and watercolor textures in pink, blue, and purple hues. The large text reads: "WHEN HELP TURNS TO HARM" and underneath, in even larger letters, "COMPLICATED." The lower portion has a blue background and white text that says: "Catch the Boston screening of EDS film COMPLICATED Thursday Dec 11th Sponsored by The Connective Tissue Coalition www.chronicpainpartners.com" There's also a circular logo in the lower left corner with the text "EDS Awareness" and "Ehlers-Danlos Syndromes" inside.
December 5, 2025 at 10:30 PM
cppedsa.bsky.social
December 3rd, 2025 is International Day of Persons with Disabilities - something folks with EDS and HSD know a lot about, as the majority of us find ourselves disabled, sometimes in multiple ways:

buff.ly/HJxQFBl

#EDS #hEDS #HSD #MCAS #POTS #Disabilities #zebras #MedSky #IDPD
A digital poster with a light orange background and illustrations of diverse people with disabilities. At the top left, there is a circular logo with “EDS Awareness” and “Ehlers-Danlos Syndromes.” In the upper right corner, there is an icon of a hand cursor touching dotted Braille. The central text reads: “December 3, 2025 is... International Day of Persons with Disabilities.” Below the text, there are six illustrated characters representing different kinds of disabilities: A person in a wheelchair holding a blank sign. A person with dark glasses walking with a white cane. A woman with crutches. A person sitting cross-legged, appearing to experience a mental health condition. A person making a hand gesture for sign language. A person wearing a medical face mask. The design uses a bright, inclusive style to convey awareness and support for people with disabilities.
December 3, 2025 at 1:06 PM
cppedsa.bsky.social
We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy this December in our newsletter...

buff.ly/4HN9zN2

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #POTS #MCAS #MedicalKidnap #FII #Doctors
Memorial tribute graphic featuring two photos of John Ferman at EDS conferences, one in a light purple collared shirt with a name tag, and the other in a black Ehlers-Danlos Syndrome Awareness t-shirt. At the top, large bold text reads "December 2025" and "IN LOVING MEMORY" with two doves and an EDS (Ehlers-Danlos Syndromes) Awareness logo. Below the photos is the name "John Ferman, Founder of Chronic Pain Partners." Decorative elements include two lit candles, two Christmas wreaths with red bows, additional white doves, and a gold arrow with the word "Plus..." at the bottom. The overall color scheme is teal, white, and gold. The design has a gentle, commemorative tone.
December 2, 2025 at 1:14 PM
cppedsa.bsky.social
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
November 26, 2025 at 1:06 PM
cppedsa.bsky.social
Reprising our best EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations

www.chronicpainpartners.com/eds-holiday-...

#EhlersDanlos #EDS #hEDS #HSD #Hypermobility #Fibro #Fibromyalgia #MECFS #NEISvoid #CPP #Spoonie #Spoonies #Zebras #Holidays
A festive holiday-themed graphic. At the top, there is a gold ribbon banner with a red bow and the words "EDS Holiday Hacks." To the left, a logo reads "EDS Awareness - Ehlers-Danlos Syndromes." Below, a warm dinner table scene features a lit candle surrounded by greenery, with wine glasses and plates in the background. Over this image, text says "Twelve Tips for Setting Yourself Up for Success." At the bottom, a blue strip contains the website address "www.chronicpainpartners.com."
November 24, 2025 at 3:32 PM
cppedsa.bsky.social
We share the following with heavy hearts: In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness

buff.ly/Vm7lTbi

#EhlersDanlosSyndrome #EDS #hypermobility #hEDS #HSD #zebras #Spoonies #NEISvoid #POTS #MCAS #ChronicPain #Support #Autism #ADHD #Genetics
Memorial image featuring two photographs of John Ferman in recent years, shown smiling in both photos. One photo shows him wearing a purple button-up shirt and a lanyard with a name tag. The other photo shows him in a black t-shirt with "Ehlers-Danlos Syndrome Awareness" text and a zebra graphic, wearing a conference badge. Above the photos, the text reads "IN LOVING MEMORY" in large, bold blue letters, with two illustrated tan doves flying near the words. At the bottom, on a solid blue background decorated with subtle flowers, the text states: "John Ferman Founder of Chronic Pain Partners" The white circule EDS Awareness logo
November 17, 2025 at 7:10 PM
cppedsa.bsky.social
Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025:

buff.ly/y0TmObZ

#EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky
Promo graphic with teal and orange colors, containing text and a double helix DNA image. At the top left is a label: "BREAKING NEWS", and at the top right is a circular logo "EDS Awareness - Ehlers-Danlos Syndromes". Main headline in large orange box: "UPDATE FROM THE NORRIS LAB ON HEDS GENE" Below, the poster says: "A new study, led by Dr. Cortney Gensemer (an EDS patient herself), marks a real genetic breakthrough in hEDS research. Her study focused on the kallikrein (KLK) gene family, as this family of 15 genes are involved in numerous biological processes."
November 6, 2025 at 3:10 PM
cppedsa.bsky.social
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

buff.ly/ofignWQ

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support
A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."
November 3, 2025 at 3:32 PM
cppedsa.bsky.social
Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity:

buff.ly/lYfYnmv

#EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid
Color illustration of a couple in a lab showing a young woman in a wheelchair with a cat on her lap face to face with a gentleman with glasses seated next to hear so they are at the same head height. A microscope and beakers show on a counter. A pink backpack on the floor. "The Chemistry Test" by Georgina Frankie. "there are some things books can't teach...".
October 31, 2025 at 2:14 PM
cppedsa.bsky.social
From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors

buff.ly/Dys6qeP

#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky
Logo for Brigant Laboratory showing dark blue text on a light gray background reading BL LABORATORY. The B and L are extra large, with a DNA twist running along the vertical length of the L, and molecular connectors coming off over the B.
October 30, 2025 at 2:10 PM
cppedsa.bsky.social
Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis

buff.ly/yZJQeDw

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky
Blue on white infographic reads: "BUILDING YOUR MEDICAL TEAM: A PATIENT CHECKLIST." There are seven tips, each with a green checkmark: Describe your daily life clearly: Tell doctors about your pain, fatigue, GI issues, and daily limitations. Use relatable examples: Compare your challenges to things doctors know (like having the flu). Ask trusted doctors for referrals: “Who would you send your own child to?” is a powerful question. Stay focused in appointments: Bring a short, organized list of issues related only to that doctor’s specialty. Share helpful resources: Provide links to articles or presentations. If they’re not interested, consider moving on. Don’t overlook younger doctors: They’re often eager to learn and open-minded. Use your support network: Ask local groups and friends. There are small illustrations including a thermometer, clipboard, doctor, group of people. "www.chronicpainpartners.com" and in the top right corner is a logo for EDS Awareness (Ehlers-Danlos Syndromes).
October 29, 2025 at 2:07 PM
cppedsa.bsky.social
New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome - another solid result from the Norris Lab at MUSC:

www.chronicpainpartners.com/new-study-re...

#hEDS #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #Science #Medicine #Research #MedEd #Doctors #Immunology #MCAS #MedSky
Background is orange, and image shows close-up of multiple transparent test tubes, some filled with a blue liquid, with a pipette dispensing liquid into one of the tubes. Text on the image reads: NEW STUDY REVEALS Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome Published in ImmunoHorizons, this additional research provides yet another fresh biological insight into hypermobile Ehlers–Danlos syndrome (hEDS), the most common but least understood form of EDS. HEDS is a multi system condition leading to dozens of comorbid conditions. This study found clear markers for system immune dysregulation in patients with hEDS. Chronic Pain Partners www.chronicpainpartners.com Circular logo top right says: EDS Awareness Ehlers-Danlos Syndromes
October 27, 2025 at 5:44 AM
cppedsa.bsky.social
Celebrate #InvisibleDisabilitiesWeek Oct 19-25, 2025 with us by checking out our new podcast episode on that very subject!

buff.ly/OhQXbZY

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #POTS #MCAS #Spoonies #Zebras #NEISVoid #Disability #DisCo
Podcast promotional graphic. The background is white with various images and text placed around. In the upper left is a logo reading "EDS Awareness - Ehlers-Danlos Syndromes" with blue and orange coloring. The text nearby says "Presents... PODCAST". A large speech bubble on the right contains the text "EPISODE 1: Invisible Disabilities" in blue letters. Across the center, the text "EDS UNPLUGGED" is written in bold black letters on a diagonal, with a gold ribbon weaving through the letters. There are two images of Black women in black athletic wear: one on the left holding a megaphone, and another on the right standing with a mobility aid and one arm raised. At the bottom right is a picture of Kate Schultz with glasses giving a thumbs up, wearing a purple shirt with colorful images on it. Below the central text, in blue, it says: "With guest: Kate Schultz".
October 19, 2025 at 2:14 PM